Define Normal

The other day someone was telling me story about an autistic person they knew that grew up to be "Pretty normal" 
They spoke of the fact that he was able to actually hold a job and function in society.

Mabye it's denial, mabye it's determination;but it doesn't even occur to me to think that Caitlyn might not be able "function" in "normal" society. What is normal anyway?

Will she have difficulties? Of course. Will she be different? I'm sure. But I refuse to even let my mind go to a place that thinks that she won't learn to talk,that she won't learn to relate to her peers on some level,that she won't understand the world around her. I refuse.

To me,just being told "Your child has autism." has a dead end associated with it. It's just this label you have to live with. They don't tell you what to do,there's no cure,there's not a prescription they give you. They just suggest therapy and leave you to struggle through HOW to live with it. But I don't want to just live with it. I want her to rise above it.

I've been reading everything I can get my hands on,researching all traditional and non-traditional methods. I decided a while back to stop vaccinating, I'm tweaking her diet and ordering a bunch of supplements. We're working on speech and behavior and sign language every day. I'll never give up on her being able to talk and function "normally" 

I read a simple quote that was so profound to me -  It is better to light a candle than to curse the darkness.

 What good will it do me to wallow in self pity or feeling sorry for Caitlyn and the life she might have? I should just work to change it. Sure,if you read a few blogs back,I have sad days and hard days and days when it seems like nothing is getting through to her, but then I have days like today,where she shows enormous break throughs by saying a word or doing a sign,that I've been trying to teach her for a year and I feel like it's all worth it and it reminds me to not ever give up. 

I have had to remind myself the last several weeks to not let my mind go to her future and all the worries that lie there,waiting for us. Today has enough worry of it's own and I just need to be grateful for any progress I can make with her day by day.

I know it's a trait in the women in my family,to be tough as nails and Caitlyn sure as God exists,possesses that trait in spades. But right now,she's in a little bit of a different world and I need to be the one who brings her back into my world and I need the strength of a million chariots to do it. I am thankful I serve a God who is strong,when I am weak and who can lift me up and will see me and my baby through this.

I pray that if you detect even the slightest bit of determination in my writing, that you would wish that same will power onto my daughter.
One day,she's going to tell me she loves me,I know she will and that will make every single step in this journey beyond worth it.

 

 
  

Hope in Despair!

Thank you to my friends and family who prayed today for Caitlyn. To those who don’t know. We went in and spent the day at The Children’s Hospital to find out if Caitlyn has autism and I got more diasnosis’ than I bargained for.

Today is one of those days, that I’m pretty sure will be seared in my memory forever.

 I was told over and over that absolutely, obviously without question, she has autism. And as I was just trying to swallow that basic knowledge, I had to hear it used in every sentence. “Because she her autism ,since she’s autistic…”

For instance: Because of her autism, I was told she has severe developmental delays, to the point that she’s only functioning around 1 percent for her age group. In some area’s, she functioning as low a 4 month old. So, they decided to also give her a diagnosis called “Global Developmental Delay”

She also got a diagnosis of a sleeping and eating disorder. They kept saying she was “full code”

Then, they wanted her to undergo genetic testing for Chromosome X and fragile X.

And then, they told me that they see what all her therapists are seeing and Caitlyn is having Stare off seizures. So, back to the hospital we go for an EEG.

And while we’re at it, let’s test her for a couple other things in the lab. If you know Caitlyn’s history, she has an almost impossible time getting blood drawn or iv’s and her veins always blow. So, while my head was still spinning from all the information they just gave me that will impact my child’s life for the rest of it, I have to go and pin her down with 2 other nurses and listen to her scream bloody murder, while we got SEVEN tubes of blood from this little person in 3 different spots, cause her veins kept blowing.

Then she almost passed out on the way back to the car, cause she was so weak and dizzy.

And that in the briefest nutshell possible, sums up our day. It all seems a bit like a blur. I don’t know if, as a parent you’ve ever received that much bad news at one time, this isn’t the first time it’s happened to me, sadly. But let me tell you, it’s hard to fathom, until it happens.

My mind was immediately spinning on what programs I need to get her into, what changes in her therapy I need to make, what I need to do more, what I need to do better. I made a list and checked it twice and started making all my phone calls and doing what I need to do to get her the best of everything to help her.

My heart hurts for her and for what an uphill climb she’s had since day one, but I will never stop clinging to Jeremiah 29:11 for my daughter. “For I KNOW the plans I have for you, Declares the Lord, plans to prosper you and NOT to harm you. Plans to give you HOPE and a FUTURE.”

It’s not God’s will for Caitlyn to suffer and I am ending this awful day, bowing my pain at his feet and choosing to speak hope, not despair over my precious Caitlyn no matter how grim things looks some times. We just have a little higher mountain to climb now, but by God’s grace, I’ll keep fighting for her, till my dying breath.

I beg of everyone for your faithful prayers for my baby. God hears you and we need them so much. Pray for wisdom for Matt and I, as we decide how we need to move forward and what she needs. Pray she will grow and learn and be able to talk and surprise everyone.

 I appreciate the kind words I’ve received, as my heart is in need of comfort right now!